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Miscarriage/pregnancy loss

Find support and share your experiences on our Miscarriage forum. See also legal rights and support after baby loss.

Original poster

recurrent miscarriers, how many of you have found a cause?

80 replies

just1moreplease · 01/11/2009 18:49

i have noticed quite alot of post lately from women who have miscarried 3 times or more and have been told its just down to bad luck. i find this really suprising.

i have had 4 mc's since sept last yr. i have 2 dc from my 1st marriage and had no problems concieving or carrying them.

i am right at the beginning of the nhs tests, first lot of bloods all appear to be fine. i dont hold out much hope of finding an answer though.

how many of you have been given a reason for your mc and what treatment did you have?

also wondering how many of you gave up on the nhs and went private. what were the different tests you had done that werent offered on the nhs. anyone had nhs tests come back normal but then had differnt results with private testing?

was really hoping to have these tests and to get answers. i would really have a hard time getting the funds together to go private but if there is a big difference then i might not have much choice.

sorry for all the questons and the very long post! any answers gratefully received!

OP posts:
sh77 · 14/11/2009 18:08

Gosh sorry about the bad spelling.

sue10 · 14/11/2009 18:16

Dear sh77, i am so very sorry for what you are going through right now and for the sad loss of your daughter, please accept a sincere cyber hug from me.

I would definatley concisder having the tests, some consultants are not for them but i think in time these level two tests will be part of the norm for people like us. I thought that the karyotyping test was all part of the level one tests that the nhs did.

I had a mmc, i was 9 weeks but baby/feotus had stopped growing at 6 weeks (just after we had had a scan and everything seemed ok!) I opted for a medical management as couldn't cope with the waiting in the end it just got too much.

Thinking of you at this difficult and painful time.
suexxx.

sue10 · 14/11/2009 18:18

excuse my spellings!!!! Shame we can't edit these posts like you can on other forums! Think im typing too quickly!
XXX.

hellsbelles · 14/11/2009 18:18

Sorry to hear so many going through all this.

I had DS with no problems but then 5 miscarriages trying to conceive DC2. I was lucky enough to have health insurance and they paid for investigations. I went to Mr Paul Armstrong at the Portland and although all tests came back fine there seemed to be an issue with the way I was reacting to DH's blood - so I had a controversial treatment called immunisation therapy (not covered by insurance). Not painful just involves DH's blood treated and then injected into me before 6th week of pregnancy. I did lots of research on it and I know a lot of people question it's validity. Mr Armstrong himself said that if I kept trying - even without the treatment I may be fine. But the 6th time really was the last one I could bear (4 of hte previous miscarriages had been missed ones at about 8 weeks and had to be resolved by D&C with we all found very distressing).

Final go (with the treatment) resulted in DD! However (not meant as a scare story) - I did get an incompetent cervix at 23 weeks - possibly from all those D&C's so had to have cervical stitch and strict bedrest for the remainder of the pregnancy!

But she's here now and all the horror seems so long ago. Wishing you all lots of luck and if anyone wants any more info let me know!

sue10 · 14/11/2009 18:23

Hi hellsbells,
what a wonderful positive story, thanks for sharing it with us, it gives us all hope.

I am going to be having the same treatment as you LIT with paul Armstrong if my next try fails. I am trying with intralipids and all the usuals next week!!!!, god i hope it works as we have no money left and will have to wait some time befoer we can try again using the other immune drugs.

Thanks again
xxx.

hellsbelles · 14/11/2009 18:28

Sue- wishing you lots of luck and please do let us know how it all goes.

I really had given up and don't know what made us try that last time - particularly as there is so much negative stuff on the internet about immunisation therapy - but it worked for us and hopefully for you too.

sue10 · 14/11/2009 18:32

Thank you, will let you know the outcome.

Alot of the girls now seem to be going to Athens for donor lit (even though they dont have a match with their dh) as they do it slightly different to the way Paul does it but i think we would probably try him first. I dont know how many more mc's i can take so after this attempt we would also look into surrogacy.
Thanks again
XXX.

hellsbelles · 14/11/2009 19:03

just read your question just1more and my problems occurred after DS1 - so it can happen after a normal first pregnancy.

sh77 · 14/11/2009 22:54

hellsbelles - you are lucky wit your insurance as BUPA won't pay for my erpc. Which company are you with?

Your experince shows there is hope.

samoy · 14/11/2009 23:09

Hi there ladies, i find your stories so interesting. I ve had 4 miscarriages following 1 ds and have browsed through Dr Beers book-im convinced my problem is auto-immune. Im currently waiting for an initial consultation with St Marys so will see if that throws any light on my situation. If not, at least i have other avenues to pursue , thank you for sharing your stories x

Original poster
just1moreplease · 14/11/2009 23:33

very interesting posts tonight ladies. thank you all for posting.

guess i had better get saving for these tests then! i wish i had just gone for them straight away. feels like we have wasted the last year waiting for the poxy nhs tests.

really getting to me tonight. i only want a baby! why does it have to be soooo hard

x

OP posts:
jellybeans · 14/11/2009 23:44

Hello I am very sorry for your losses. I have had 4 losses at 6, 11, 20 and 23 weeks. The 23wk one, my DD had a chromosome disorder but the others just happened to assumably healthy babies. I happily had 4 normal pregnancies too, one being twins so I now have 5 DC and count myself lucky every day as it was so hard to have them. I was diagnosed with hughes syndrome (blood clotting) and possible weak cervix. I had to inject blood thinners and have a cervical stitch in pregnancy. They tested me after my late loss. I was so scared as was given a 50% risk of further m/c and stillbirth. I hope you find some answers, take care.

hellsbelles · 15/11/2009 09:10

sh77 - I'm with AXA PPP. I was very lucky - I really am so thankful to them. They paid for my D&C's (my first was on the NHS and a really horrific experience - I had to wait ages for it and subsequently got a very nasty infection...the subsequent ones were covered by my insurance and made a horrible situation slightly more bearable) and my recurrent miscarriage investigations.

However they didn't pay for the treatment and rather shockingly the cervical stitch? Which was a nightmare and I have no idea why but was too fraught to persue it as it had to be done urgently.

Original poster
just1moreplease · 15/11/2009 13:32

hellsbelles quick question about your private healthcare cover. did your policy cover the level 2 tests but not the treatment? or did you have to pay for the tests yourself? did you have any nhs tests before using your private cover?

OP posts:
sh77 · 15/11/2009 18:46

Thanks hellsbelles. You are so lucky with your insurance!

Sue - Spoke my husband about the private tests and he said we should go for it. I just wondered how you decided to go with Care in N'ham instead of Raj Rai or Lesley Reagan? Did he do addtitional tests that the others didn't?

sue10 · 15/11/2009 19:05

Hi sh77,
was just about to close down pc for the night but just saw your message.

The probleom with Raj, Lesley and Quenbey is that they only do level one testing and not full indepth testing so if you have probs with clotting issues for example and just need steroids/heparin ya ok BUT if there is another reason for mc and implantation problems such as high tnf's/ nk cells then steroids and heparin might not be enough. The other clinics do level two testing 'chicago tests', google it. I was amazed when i realsied that there were more tests and actual reasons as to why mc can happen.

This is where the private clinics such as CARE Notts with George Ndukwe and Mr Gorgy at the Fertility Academy come into it as they use other drugs such as Humira/intralipids etc as where the nhs do not use these yet.

I wasted time by going through the nhs and only wished i had gone straight to CARE before hand as you can only cope with so many mc and they keep saying try again with steroids/aspirin blahblahblah!!!!!

It's difficult to decide where to go, i spent ages going over and over it with my hubby (think he switched off in the end lol) but on fertility friends there are vast amounts of info and knowledge on this which helped me to make the decision.

Hope i haven't waffled on too much.
sueXXX.

sue10 · 15/11/2009 19:20

I just wanted to add than i am no expert in all of this but just sharing my own experiences and opinions.

When we made our decision as to where to go we had to be 100% sure in what we were doing as for some people a few hundred pounds here and there isn't alot of money but we are not well off so i had to get it right and thankfully i feel confident that i am with the right clinic and consultant. Only time will tell if these drugs that they use will work their magic for me!!! They have worked for so many other ladies, fingers crossed i can be one of them too.
XXX.

sh77 · 15/11/2009 20:30

That is really great advice Sue. Thank you so much!

I wish you the very best of luck. xx

hellsbelles · 15/11/2009 21:01

just1more - gosh - I don't know what level the tests were...but they did pay for all tests Mr Armstrong requested.

I didn't have any NHS ones....my GP wrote me a great letter and I think that helped get my insurers to agree.

They didn't pay for the treatment - because (as I understand it) it is very controversial and not an 'accepted' treatment. At the time I think Mr Armstrong was one of the only people doing it in the country - that's probably changed now.

sue10 · 15/11/2009 21:06

Just to say you are right hellsbells, Mr Armstrong is still the only consultant doing LIT in the UK, some go to Athens in Greece aswell. Word has it that Mr Gorgy from the Fertility Academy might start doing LIT in the near future as so many ladies want/nee it.
Nightnight
XXX.

Original poster
just1moreplease · 16/11/2009 14:35

thanks for all this info.

i have an appt with nhs cons this week so will see what happens after that.

after doing a small amount of research i cant find anywhere local to me that offers the level 2 tests. no idea where we will go.

best get saving tho!

thanks again x

OP posts:
sue10 · 16/11/2009 14:45

Hi j1mp,
we have to travel to Nottingham to the CARE Fertility clinic there which is about 5 hour round trip (if the traffics good)London would probably be a bit closer to us but i dont like tubes and busy places!

Goodluck with your appointment this week.
sueXXX.

Original poster
just1moreplease · 16/11/2009 14:57

who do you see in nottingham? i have just been looking at dr armstrongs website.

london may be better for me, only about an hour by train. my geography is crap, dont even know where nottingham is lol.

OP posts:
Original poster
just1moreplease · 16/11/2009 15:48

hellsbelles do you mind if i ask what level of care you have with axa? i am gutted i didnt take out cover when it was offered a few years back through work.

althogh my sis in law has seen the heartbreak we have been through and wants to cover herself just incase.

OP posts:
sh77 · 16/11/2009 16:12

Sue - I had a trawl through Care's website and couldn't find any info on tests for recurrent MC (I was probably being thick to honest).

I am booked in for my ERPC on wednesday morning. I am really scared that something will go wrong. I know the risks are low but I have had such a crap 6 months that risk stats mean nothing to me anymore. As I am 11 weeks and baby died at 5-6 weeks, time to get things moving.